Posts tagged ‘Undiagnosed’
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“My Undiagnosed Journey” by Kathleen Ann
I am Kate, and I am 28 years old. Growing up I had a pretty typical childhood; I enjoyed exploring outside with my friends, I adored soccer and...
Rare Disease Report: Being Undiagnosed is a Diagnosis (until further noticed)
Please watch: Being Undiagnosed is a Diagnosis (until further noticed) It first viewed on the Rare Disease Report Gina Szajnuk, Co-Founder and Executive Director, Rare and Undiagnosed Network (RUN) talks...
Rachel Nielsen: Still Undiagnosed but we received some answers!
Another update! (You guys are probably sick of me by now😅😉🙈) I recently got some results back from a muscle biopsy in Wisconsin and I saw a geneticist...
“Undiagnosed For TWO Years” by Hailey Sampsel
Two years ago, my health journey started and my whole life changed. Instead of my life of competitive tumbling, running track, and being a straight A student. My...
Rachel Nielsen: H.O.P.E (hold on, pain ends)
I’ve found that having a chronic illness is much like losing someone very close to you. People will say they understand your pain, they’ll tell stories about how...
AllTrials is gathering stories of patients!
AllTrials is a non-profit focused on raising awareness of the tremendous need for higher standards in reporting all results of clinical research trials. Patients’ voices are incredibly important in this movement,...
The Mighty: “So, You Want to Start a Rare Disease Nonprofit? Here’s 10 Things to Remember” by Gina Szajnuk
This story originally appeared on The Mighty So, You Want to Start a Rare Disease Nonprofit? Here’s 10 Things to Remember I am the mother of three children...
Online platform to embrace wide community of people affected by genetic diseases by Deborah Levenson
Connect. Ask. Answer. Discover. RUNmyDNA.com is going to launch soon! Great article on our new platform! We will be having a webinar soon for our early registered users!...
Diagnosed but still undiagnosed? by Brittany Stangley
Have you ever waited and waited for what felt like forever to find something out? Years in the making and I finally got the news I’ve been waiting...
Grayson McClure: “23 and Trapped in an Apartment” By JOHN M. GLIONNA
Reno man’s suffering from undiagnosed disease also traps his mother By JOHN M. GLIONNA SPECIAL TO LAS VEGAS REVIEW-JOURNAL RENO It’s late afternoon and 23-year-old Grayson McClure is...